Rebecca Teagarden

Inpatient Palliative Care Services for patients with terminal illnesses in the UK and US: an observational and literature review Rebecca Teagarden, OMS IV 28 September 2008 Charles J. Cannon Edinburgh Geriatric Tutorial

Introduction The hospice and palliative care models of healthcare were originally employed in the United Kingdom (UK). Dame Cicely Saunders established the first modern hospice, St. Christopher’s Hospice, outside of London in 1967, which commenced care for the dying as a medical specialty [1]. Over the course of the next four decades, the concepts associated with hospice and palliative care have progressively permeated worldwide. Along with the geographic expansion of palliative care has come the broadening of palliative care services. While much of the research, development, and experience within the specialty of palliative care lies in the hospice realm, there has been steady advancement with regard to inpatient palliative care. In fact, Ellershaw and Murphy note, “One of the greatest challenges facing the palliative care world is to transfer the model that has been developed in the hospice sector into the mainstream NHS.” (The NHS, or National Health Service, is the government-sponsored healthcare program within the UK, which is funded largely by tax revenue.) [2] Studies out of both the US and the UK have demonstrated that despite patients’ preferences to die at home, or at least, not in a hospital, the number of home deaths has remained substantially lower than the number of deaths within acute care facilities [4, 5, 6]. In the UK, data from the Office of National Statistics shows that 24.3% of people died within their homes between 1974-2003. Overall, there was a slow, but steady decline of home deaths over this time period. Meanwhile, the number of deaths among hospitalized patients rose slightly, from 54.3 to 57.8%. Long term projections estimate that if the same decline in home death continues, only 1 in 10 people by 2030 will die at home [4]. Therefore, programs such as the National End of Life 2

Care Initiative/Strategy have aimed to increase the extent and quality of end of life care in all locations [6]. Similarly, in the US, surveys have demonstrated that the general public prefers to die at home [5]. Nevertheless, studies repeatedly report that ~50% of patients die in the acute care setting [5, 7, 8], and further, that 20% of Americans die in intensive care units [7, 8, 9, 10]. Such figures from both the US and UK lend credence to the advancement of palliative care modalities. However, the expansion of palliative care services is not solely a response to the aforementioned data; additionally, it aims to address the frequently reported shortcomings in end of life care, particularly from the perspectives of patients’ families. Issues such as inadequate symptom management, poor communication between physicians, patients, and family members, poor interdisciplinary communication, delivery of care that is inconsistent with patients’ wishes, lack of attention to emotional, spiritual, and psychosocial needs and late initiation of hospice referrals have been mentioned numerous times, especially out of intensive care literature [8-15]. Today, models for inpatient palliative care typically consist of the following: • Closed unit: a unit where physicians with advanced training in palliative care assume responsibility over patient care and make decisions on appropriateness of admission to the unit. • Open unit: a unit where the patient’s primary care provider may continue oversight of care, as well as determine whether or not the patient is appropriate for inpatient palliative care. • Geographically separate unit: a unit separate from the hospital, with its own staff, which has beds specifically for patients receiving palliative care. • Integrated unit: a unit that occupies a small portion of a larger unit, e.g., palliative care beds within a surgical, medical-surgical unit. • Hospice inpatient unit: a unit designed for patients enrolled in hospice who are in need of inpatient services; may also be utilized by other patients in the hospital who are not officially enrolled in hospice. [3] Researchers have offered several advantages to inpatient palliative care units. Most prominently, inpatient units offer the benefit of 24 hour care, which is provided by healthcare professionals trained in palliative care. Such consistent and skilled oversight can improve 3

symptom management, clarification of goals of care, effective communication, and realistic discharge planning. Moreover, proponents of inpatient palliative care propose that the presence of an inpatient unit within an institution both facilitates and encourages other physicians and nurses in learning how to develop and implement palliative care principles into their practice of medicine. Nevertheless, particularly in the US, consultation palliative care services remain the most widely utilized inpatient modality [3]. The focus of the remainder of the paper will be devoted to comparing and contrasting inpatient palliative care services in the US and the UK. This review is largely comprised by results from an extensive literature review. Additionally, some of the points will be bolstered by personal experience with an inpatient palliative care consultation service at the Royal Infirmary of Edinburgh, a NHS acute care facility in Edinburgh, Scotland. The paper will conclude with a discussion on the advantages and disadvantages of each system, and where, perhaps, elements of the two systems could be integrated to yield better care for patients with terminal illnesses. Inpatient Palliative Care in the UK Current Initiatives. The current structure of end-of-life care in the UK began with the inception of the Department of Health’s End of Life Care Strategy in 2004. From 2004-2007, ₤12 million was devoted to this program, which aimed to build on the strong foundation of palliative care resources already in place. Stemming from that core was the development of three new projects [6]: • Gold Standards Framework (GSF): attempts to organize and improve palliative care delivered by general practitioners. • Liverpool Care Pathway (LCP): this integrated care pathway was designed to transition the best elements of hospice care into a modality that could be used in any other care setting. This pathway is intended for use during a patient’s last days to hours of life. 4

• Preferred Priorities for Care: this advanced planning tool assists healthcare providers in initiating discussions with patients and their families pertaining to carers’ and patients’ needs, preferences for EOL, and locally available services [6, 16]. Overall, the End of Life Care Strategy aims to reduce the number of hospital admissions through administering the most coordinated and patient-preference oriented care at home or in NHS continuing care facilities. Nevertheless, policy makers are quick to note that in the foreseeable future, acute care facilities will more than likely remain the place of death for the majority of patients [6]. According to the Hospice and Palliative Care Directory, as of 2008, there are 175 total inpatient palliative care units in England; 42 are NHS sponsored, while 133 are funded by voluntary organizations. In total, 2645 beds are strictly devoted to patients in need of palliative care services in inpatient facilities across in England [6]. In addition to specific inpatient units, as of 2006, there were 307 hospital support services (or palliative care consultation services, as they are referred to in the US) in the UK; within Scotland alone, there were 39 support services [26]. Even with these options in place, members of the Department of Health recognize that improvements can be made. The following issues have been cited as areas for potential change: • Acknowledging that care for the dying is an issue within the acute care setting; • Addressing appropriateness of treatment; • Attempting to make provisions for patients to return home if that is the most desirable option; • Encouraging senior members of the healthcare team to accept leadership roles; and • Educating staff at all levels of the tenets of quality palliative care [6]. Further, the strategy goes on to endorse the development of specialist palliative care teams in all acute care hospitals, which are equipped with the skills to treat patients based on a need basis, as opposed to specific diagnoses. From there, the plan outlines the development of mechanisms to ensure adequate identification of patients at or near the end of life, initiation of conversations relating to preferences for the end of life, and establishment of an appropriate care 5

plan. Additionally, creation of a framework of quickly discharging patients from the acute hospital setting to NHS continuing care facilities – in an attempt to match goals of care with those of the patient’s – has been proposed. Finally, effective documentation and monitoring of quality of care round out the action plan for palliative care in the acute setting [6]. In total, the NHS plans to devote ₤88 million and ₤198 million over the course of 2009 and 2010, respectively, in an effort to make the entire End of Life Care Strategy a reality [6]. The aforementioned principles and visions of the End of Life Care Strategy have been embraced by the Scottish Partnership for Palliative Care. In 2000, the Scottish Executive Policy, Our national health, a plan for action, a plan for change, suggested that palliative care should be available for all on the basis of need, not diagnosis – much like the sentiment of the English policy. With that in mind, the Gold Standard Framework Scotland was established. Furthermore, the Liverpool Care Pathway has found its way into Scottish healthcare facilities, including most acute care institutions. Early studies indicate that implementation of the LCP has resulted in better symptom control, improved communication between patients, families, and multidisciplinary team, and more optimal care for the patient following death [16]. A sample of the LCP (hospital) can be obtained at the following website: http://www.mcpcil.org.uk/files/LCPHOSPITALVERSIONprintableversion.pdf Practical applications. Given the development and implementation of the LCP, the most widely utilized care pathway in the UK, greater attention has been paid to the concept of illness trajectory. Murray et. al. [17] has extensively described the three trajectories typical of chronic illness today. Cancer, for example, tends to have a steady downward progression with a foreseeable terminal phase. Chronic diseases such as COPD, heart failure, chronic kidney disease usually display a gradual decline, which is interrupted, and accelerated by acute 6

exacerbations. Finally, a gradual, progressive decline characterizes the classic course of patients with dementia or general frailty. Even with these thoughts in mind, accurate prognosis continues to remain a great challenge to providing appropriate care [15, 18]. Therefore, disease severity, rather than predicted prognosis tends to be the guide in the UK. Generally, the following patient situations indicate appropriateness when considering initiating the LCP: • Bed bound; • Only able to consume sips of fluids; • Displays impaired concentration; • Semi-comatose; • Not able to consume oral tablets. Along with much needed symptom control (Selected symptoms include: dysphagia, nausea, vomiting, constipation, confusion, agitation, restlessness, distress, awareness, consciousness, dysuria, respiratory secretions, pain, dyspnea, edema, pruritis), the LCP addresses the discontinuation of non-essential treatments, promotion of insight into condition, awareness of religious and spiritual needs, as well as the family’s understanding and wishes for appropriate communication [19]. Barriers to care. Despite the presence of an integrated care plan, barriers to adequate and appropriate end of life care continue with the UK system. Before examining the barriers, it is important to understand the societal norms in the UK. Unlike the situation in the US, where the concepts of autonomy and patient self-determination ground the decision making framework, a much more paternalistic paradigm is employed throughout the UK [20-24]. Particularly in the acute care setting, end of life care often begins with decisions to withhold or withdraw life sustaining interventions. In the UK, it has been customary for such decisions to be made with little or no consultation of the patient or the patient’s family’s wishes 7

[20, 23]. Many reasons have been hypothesized for leaving the decision-making to healthcare professionals [20, 24]. It is widely believed that making decisions about end of life care – from withholding and withdrawing to implementation of a Do No Attempt Resuscitation (DNAR) order, as is the case in parts of Scotland – relieves a tremendous burden from patients and families. Further, some offer that patient and family expectations with regard to intensive care interventions may be unrealistically high; without extensive and clearly articulated explanations, many professionals experience difficulty in conveying reasonable probabilities of survival [20]. Additionally, in a system that is designed to provide for all patients, it has been offered that the impact of fixed resources combined with an aging population that is demanding more of those resources lead to an element of rationing of care through decisions to withhold or withdraw treatment deemed to be “futile.” The UK courts go so far as to say that “continuance of intrusive life-support systems” if deemed to have no prognostic indication constitutes “the crime of battery and tort or trespass to the person” [24]. Nevertheless, even with the professional obligation to limit unnecessary and “futile” care, a great deal of resistance to withholding and withdrawing curative care, in exchange for transition to palliation, is documented in the literature. Proceeding with routine care, as well as the perpetual idea that palliative care is analogous to “giving up,” remain great challenges within the acute care setting. Such perspectives often result in missed opportunities to address concerns and preferences for end of life care with patients and their families. Therefore, the latest layers of the UK initiatives for improving palliative care in the acute care setting focus on involving patients to a greater extent throughout the entire process of their illness. It is the hope of policy makers that with time and continued implementation, professionals will begin to become more 8

comfortable with initiating conversations on advance care planning with patients and their families [25]. Results. Levack et. al. [26] recently published results from referrals to a hospital based palliative care consultation service from 1999-2006. The team consisted of physicians with palliative care training, as well as specialist palliative care nurses. Throughout their experience, the team noticed a 300% increase in the number of referrals; much of the increase was comprised by patients with non-cancer diagnoses. The consultants, in many cases, were able to manage the most complex symptoms and initiate discussions on goals of care; ultimately, with increased collaboration with referring specialists, the palliative care consultants were able to discharge the care of the patient back to the referring team. Similarly, in addition to improved symptom control, other studies have reported enhanced abilities to heighten patients’ insight into their illness, to reduce overall costs of care, and to facilitate better communication with regard to EOL issues secondary to the utilization of inpatient palliative care services. Much like the US, as previously illustrated, this model of care is typical of that found in the majority of UK hospitals [26]. Inpatient Palliative Care in the US Current Initiatives. In comparison to the palliative care establishment in the UK, the history of palliative care in the US is relatively young and continuously evolving. Palliative care became recognized officially as a certified specialty in 2006 [27]. With increased recognition and training opportunities, over 1,000 inpatient palliative care programs were estimated to be in existence in the US, as of 2006. Additionally, the availability of inpatient palliative care services has become part of the criteria for certification by the American College of Surgeons Commission on Cancer certification [27]. 9

With that, one of the most emphasized movements in the US is to integrate and to improve palliative care within intensive care units. The inception of this concept dates back to 1999, when the Robert Wood Johnson Foundation funded the Promoting Excellence in End-of- Life Care program. This group of physicians and nurses aimed to analyze available resources in an effort to draft recommendations regarding the advancement of palliative care. From this study came the revelation that 20% of deaths in the US take place in the ICU setting or shortly after receiving care in the ICU. In 2002, this group commenced the Promoting Palliative Care Excellence in Intensive Care initiative, a movement toward improving palliative care for all adult and pediatric patients receiving care in ICU settings, regardless of diagnosis or prognosis [27]. Initially, the Promoting Palliative Care Excellence in Intensive Care initiative named four institutions as pilot sites for both study and intervention through a subset entitled, Merging Palliative and Critical Care Cultures in the Medical Intensive Care Unit [28]. Out of the establishment of inpatient palliative care services at these locations came several important findings regarding the need for palliative care, particularly within the ICU setting: • Many deaths occur in the ICU; many more occur in the year following admission to the ICU; • Many patients undergo unwanted admissions to the hospital at the EOL; • Dissatisfaction and distress amongst families of patients in the ICU can be significantly high, and appropriate support measures are often lacking; and • Conflicts between families and medical staff with regard to appropriate treatment are common [28]. As a result of these findings, several key interventions were put into place in an attempt to integrate the worlds of palliative care and intensive care. After establishing connections with clinician-leaders within the ICU units, the group proceeded to extend staff education to the broader ICU staff. Additionally, the group influenced several changes, which were felt to enhance the ability to deliver quality care within the ICU setting. Such practices involved policy 10

alterations, such as the creation of open visiting hours, development of standardized forms for quality control and greater attention to palliative care issues, and implementation of multidisciplinary rounds including palliative care specialists. Attempts to strengthen communication between patients, family members, and healthcare professionals were made via placing greater emphasis on regular family meetings, beginning at the patient’s admission, as well as by encouraging the construction of “Get to Know Me” posters [28]. Practical Applications. Many arguments are made supporting the need for palliative care, particularly in the ICU. In fact, Richard Mularski goes so far as to state, “The absence of appropriate palliative and EOL care in the ICU should be viewed as a medical error,” [8, p.S309]. The current initiatives advocate for many of the implementations that were made at the pilot sites for the Merging Palliative and Critical Care Cultures in the Medical Intensive Care Unit. More specifically, the calls for change emphasize strong interdisciplinary communication and collaboration, appropriate and effective symptom management, and patient and family centered care that involves shared decision-making between patients, families and healthcare providers [10, 11]. Such concepts become particularly important when revisiting the idea of illness trajectory. As is commented on in the British literature, American literature acknowledges the variability of illnesses, which can take on courses of sudden death, progressive decline, or slow progression with occasional exacerbations [7]. Given the myriad of possibilities, which are further complicated by the element of individuality, Campbell argues that the tenets of palliative care have a much needed place within the ICU, as “nurses and physicians who practice in the 11

ICU are largely trained in resuscitation and prolongation interventions, with little or no training in palliative care competencies,” [7, p.S355]. Barriers to care. The aforementioned interventions and points supporting palliative care in the inpatient setting are derived from the well documented literature on barriers to quality care – many of which have been previously discussed – especially at the EOL. From the onset, proponents of palliative care are met with the challenge of societal attitudes. Across the US, a widespread denial of death persists [12, 29]. With the continuous advancement of technology comes greater demands and expectations with regard to healthcare provisions. As a result, the combination of patients and families demanding more treatment coupled with physicians’ reluctance to initiate conversations related to the goals of care often lead to the default option of proceeding with routine care in the ICU [29]. Therefore, it has been proposed that in addition to interventions directed specifically at healthcare practices, an element of societal education must also take place in order for the aforementioned implementations to be successful. Acknowledging the inherent difficulty in such a task, some palliative care proponents suggest that earlier introduction of palliative care options throughout the course of one’s illness is one way to promote greater understanding of the tenets and goals of palliative medicine. In effect, palliative care becomes a supplement to critical care, thereby attempting to provide a more seamless transition into the spectrum of palliative care measures when the benefits of curative care diminish [12]. Results. Recognition of the need for palliative care services in the inpatient setting is supported by the recorded 67% growth in programs from 2000-2003 [30]. Increases have been linked to the rising number of physicians and nurses receiving certification in palliative medicine, the emergence of more palliative medicine fellowships, and an increasing amount of 12

funding, research, and literature devoted to palliative care. Further, some characteristics common to institutions that have implemented inpatient palliative care services include large hospital size, academic center status, not-for profit status, and affiliation with the US Department of Veterans Affairs [30]. The rise in the number of inpatient palliative care services has generated a number of findings to bolster the benefit of palliative medicine, particularly in the ICU setting. Recent studies have noted more expedient implementation of symptom control, which has also led to addressing prognosis earlier on in the course of patient care [7]. Additionally, inpatient services have resulted in fewer subsequent hospital admissions following discharge, as well as an increased number of patients being discharged from the hospital with advance directives in place [12, 13]. Another benefit, albeit not of top priority to proponents of palliative care, is cost savings. Several studies have reported on decreased lengths of stay in the ICU, as well as to more withholding or withdrawing of non-beneficial treatments secondary to the presence of inpatient palliative care services [7, 12, 13, 31]. Discussion Similarities. A number of the previously described aspects of inpatient palliative care in both the UK and the US are similar. First, both the British and American systems are faced with the challenge of ~50% of deaths occurring in the inpatient setting. Therefore, it is reasonable that within the practice of palliative care, the following goals would exist within both systems: • Attainment of appropriate symptom control; • Implementation of effective interdisciplinary care; • Improved communication between healthcare providers, patients, and families; • Increased education and awareness of the concepts of withholding and withdrawing non- beneficial care; and • Promotion of greater patient insight into disease process. 13

As mentioned above, while the number of inpatient units strictly devoted to palliative care are on the rise in both the UK and the US, such objectives, at present, are carried out primarily by inpatient hospital support services or consultation services. Additionally, both systems have shared the benefit of reduced lengths of stay and subsequent hospital admissions, of greater symptom control, and of enhanced patient and family satisfaction. Differences. While, in some respects, both systems are arriving at the same results, there are a number of notable differences. From the beginning, the slowly evolving, though still present paternalism of medical practices in the UK should be highlighted in comparison to the emphasis on autonomy in the US. With such paradigms in place comes the focus on the opinion of the medical team in the UK, versus the importance of patient preferences in the US. The implementation of palliative care measures is slightly different between the two systems. The UK has the Liverpool Care Pathway, an integrated care pathway that can be found in almost all healthcare institutions, including hospitals, hospices, care homes, and with in community-based general practices. In the US, however, guidelines and protocols have been drafted by many of the leading organizations in hospice, palliative medicine, and cancer care. Further, many institutions have adopted individual protocols. One of the observed strengths of having one standardized or national protocol is that almost everyone from consultant level (attending physicians) to medical student was familiar with the Liverpool Care Pathway. In theory, the increased awareness and confidence in using one unified, easily transferable document could lead to greater utilization and implementation. The continued fragmentation of care in the US has resulted in efforts to create, at the very least, palliative care order sets in an attempt to increase comfort levels related to implementation of palliative care [32]. 14

Fragmentation is displayed throughout the realm of funding, as well. As previously outlined, while donations do comprise portions of palliative care budgets in the UK, the NHS has devoted an increasing amount of financial resources into further research, development, and implementation of palliative care in all healthcare settings. By comparison, palliative care in the US remains under-funded. With that thought in mind, it is not surprising that the majority of institutions with established inpatient palliative care share many of the same characteristics: large hospital size, academic center status, not-for profit status, and VA centers. Despite the differences, it is clear that the movements to integrate palliative medicine into the inpatient setting in the UK and the US are strong and proven to be effective. Proponents of these movements in both the UK and US are quick to note the slow, but steady progress. Nevertheless, a growing number of healthcare professionals from a variety of specialties are recognizing the utility of palliative care within the acute, inpatient setting. Having had the opportunity to observe inpatient palliative care services within both the UK and the US, it is clear that no perfect system exists. Nevertheless, with so many similar practices in place, among the advantages of the UK practices are greater awareness to the need and benefit of strong palliative care practices, the implementation of more substantial funding, and the institution of the widely used LCP. Slowly, practices in the US are encouraging the utilization of available palliative care services. With increased awareness and confidence in both the benefits and accessibility of appropriate palliative care options, hopefully palliative care options will continue to become more widely offered to patients and their families at the end of life in both the UK and the US. 15

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